Understanding PD
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"Shaky in Stilettos"

As I get ready for another Parkinson’s fundraiser, I press my foot into my newest pair of designer beauties, simple black strappy heels with rhinestones gracing the closure, indulging yet again in a lifetime obsession that my husband still can’t understand, yet obliges. I smile at my reflection in the mirror, just to practice as I sometimes do now to ensure I still have some animation in my expression. I notice my lips trembling a bit – damn! I had hoped this new tremor would just go away when I noticed it a few weeks ago. I’m not ready for this disease to take away my smile as well. I am grateful that at least my feet are cooperating now, whereas just an hour ago they had a mind of their own, twisting and writhing in a painful, uncontrollable manner. The wonders of drugs, which if timed appropriately render me functional and “on” when I need to be. Now almost fourteen years into this challenge, I know how to manipulate the meds into doing what I need them to do. To allow me to move forward, literally at times. It wasn’t always that way though.

My symptoms started with a slight tremor in my right thumb. Curious, I thought. As a doctor at the start of my medical career, I had heard patients describe a tremor before but to actually experience it was medically intriguing to me. I had undergone surgery to remove a benign pituitary mass. (Yes I have faced my fair share of “brain issues”!). The neurosurgery was successful and soon after my husband, a Urologist (or “plumber” as he likes to call himself), and I were excited to find out that we were expecting our first child.

And through the morning sickness and my growing belly,
the tremor made itself known.

Initially I was too preoccupied to pay any attention to it, as it was sporadic at the best of times. But as time passed, I noticed that the slight intermittent movement in my thumb became more constant and concerning.

I decided to consult a neurologist colleague at the new clinic where my husband and I had just started our practices. After a ream of clinical neurological testing, he looked at me pensively across the desk and slowly and carefully stated that he thought it was Young Onset Parkinson’s Disease. That sent my head spinning – of course I knew about PD, but all the patients I had cared for were so much older. Somewhere a vague recollection of a distant medical school lecture talking about rare cases of PD in young people came to mind. But I quickly dismissed the thought and instead turned my focus and by now, my anger towards the neurologist. How dare he even suggest such a ridiculous diagnosis? I felt sorry for the patients I had sent to him – his clinical judgment was obviously flawed!

I did however accept his offer for a second opinion from the foremost expert in movement disorders in Canada. Unlike so many in my age group, with my vague symptoms, I wasn’t looking for a diagnosis; I was hoping the second opinion would totally invalidate the first assessment. The months passed as I waited for the appointment and when the day finally arrived, the day I was to finally be accurately diagnosed, I was excited and nervous. As I entered the waiting room of the movement disorder clinic, I saw an elderly man in a wheelchair, with the typical mask-like facies and the pill-rolling tremor. I became more convinced that my initial diagnosis was ludicrous.

My turn finally arrived and I sat on the other side of the medical interview, conducted by the resident physician who was obviously nervous and new at this. His anxiety only served to heighten my own. All I wanted was to have the expert in the field to come and finally exonerate me from this diagnosis. But I was not to be so lucky. When the senior neurologist came in after reviewing my case, his conclusion was the same, Young Onset Parkinson’s Disease. The rest of that meeting was a blur. I understood the words being spoken - investigations, medications, genetic testing - but could hardly register them in my head.

And so the diagnosis was made, and the dance with denial, anger, fear and secrecy began. As the tremor worsened in my right hand, then my right foot, and ultimately progressing to the left side of my body, I immersed myself in work and our growing family. And that growing family eventually included three beautiful daughters. It was easy for a short time to distract myself with the joys of motherhood – children and their innocence and joyful attitude are therapeutic in their own right. But despite the “happy face” I needed to put on for them, beneath the surface I was in a constant state of emotional turmoil.

For a long time, I focused on the difficulties I faced on a daily basis and all that I felt I was giving up. Primarily because it was not my choice to slow down, I was not given the option. We were both enjoying parenthood, we both had blossoming careers, and we were building a new house. Life should have been ideal considering all that we were blessed with, but there was always a shadow hanging over me.

This progressive neurological disease that was taking over my body, stiffening it in the morning, cramping my feet to the point it was difficult to walk, amplifying my tremor, causing significant upper back and neck pain and turning my nights into restless exhaustion. There was no escaping it…
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